Choice's Battle with Scleroderma

My name is Choice Kinchen and this is my story.....

As so many others have experienced when faced with a life altering moment, my life changed forever while sitting in my doctor's office in 1983, 33 years ago. I can still hear the words, echoing in my ears, "You have what is called scleroderma. We don't know what causes it and there is no cure. I'm sorry, you probably have less than a year to live." More stunning words have never been spoken to me. What followed was a gamut of emotions, a slew of questions, a lot of information to be digested......bad news all around. However, that diagnosis was not the end of it. Six years later (1989), still alive, lupus nephritis was added, in 2006, Barrett syndrome, and, just recently, (2015), temporal arteritis. Together, these diseases have presented me with quite the roller coaster ride, a daily, painful struggle. But it's been predominately scleroderma that has taken its toll on me...physically, mentally, spiritually, financially.

So, what is scleroderma? It is a devastatingly disabling autoimmune disease, related to lupus, temporal arteritis and rheumatoid arthritis. There is no cause. There is no cure. Usually, the approach is to treat symptoms. My symptoms include: joint stiffness, muscle weakness, gastrointestinal problems from top to bottom, heart, lung and kidney issues and a continuous headache from the temporal arteritis. I live with intense chronic and many times debilitating pain and fatigue. I've suffered a heart attack and endured multiple chemotherapy treatments. I struggle to breathe from the first breath taken every morning. I've labored through tons of medical complications. With the assistance of a collection of doctors, my plan of treatment includes movement and exercise, including light weights, the use of appropriate meds, a reasonably healthy diet, massage, lots of rest and positive thinking. Sometimes the plan works. Sometimes it doesn't.

My ability to make a living has been severely compromised by scleroderma. I can no longer work a regular job or work a typical work week. I am currently a massage therapist, specializing in corporate chair massage but I also do table massage in my home office. Being able to work around my health (and no time clock) has afforded me the chance to continue working while allowing me to focus and help alleviate others' pain and stress issues while not constantly dwelling on mine.

I've changed where I live. The death of my mom in 2012 gave me the opportunity to move back to the warmer climate of Friendswood Texas (where I grew up). Furthermore, I was able to stay in my childhood home. Being home, having a real garden and reconnecting with folks has given me a calm, peaceful respite to an otherwise highly stressful life. On the days that I am able to cope with my disabilities, if I'm not out working a chair massage job, then I can schedule appointments for table massage in the comfort of my home office. This makes for a very advantangeous situation.

By now you probably realize...that I don't quit. Despite the hurdles of having multiple illnesses and despite the perceptions of those who tell me that I "don't look sick", I've never given up. Despite having been involved in two car/bicycle accidents ( I was the cyclist) in which the last one resulted in a rebuilt and now only 75% functional left arm, I haven't surrendered. But things are a big way. Now that I've reached 60, scleroderma has decided to up the ante in this battle. Symptoms have become more pronounced with longer duration. Flareups are becoming meaner and are getting harder to shake off. There is no respite from the pain or the fatigue. My ability to cope is waning in scleroderma's persistence. Frankly, I'm being worn down.

I've had scleroderma more years than I haven't. Having a chronic illness of this magnitude and for this long has been draining.....on everything. In particular, it has caused a giant financial crisis, a black hole if you will. This, then, is the point of my sharing my wife and I find ourselves in critical need of help and so I humbly have to ask for it. Due to the immediate financial circumstances, we are in danger of losing my childhood home (and home office) at the end of the year. Unfortunately, I am the sole breadwinner in my family as my wife suffers greatly from difficult health issues of her own. The money raised will go towards keeping us in our home, will help alleviate both medical and everyday expenses and will help us to prepare and save for the inevitable future needs.

Jim Valvano, former coach of NC State (now deceased of cancer), once said, "To me there are three things everyone should do every day. Number one is laugh. Number two is think -- spend some time in thought. Number 3, you should have your emotions move you to tears. If you laugh, think and cry, that's a heck of a day." Thirty three years after being told that I had less than a year to live, I'm still here. I would say that I've had a heckuva day. I gotta believe that I have more to come.

Thanks for reading. Thanks for caring and making a difference. Thanks for helping if you possibly can. I am grateful.
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Choice Kinchen
Friendswood, TX

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